THE founder of a Crewe epilepsy charity has linked up with local MP Kieran Mullan and a hospital chief to raise awareness of an epilepsy condition.

Wendy Shaw founded the Jon Shaw Foundation in honour of her late son, Jon, who died as a result of Sudden Unexpected Death in Epilepsy (SUDEP) in 2019.

Her meeting, with the Crewe and Nantwich MP and Mid Cheshire Hospitals Chief Executive James Sumner, was aimed at raising awareness of epilepsy risks and addressing the issue of SUDEP.

The Jon Shaw Foundation aims to provide financial support for equipment to help young people living with epilepsy to manage their seizures and to support bereaved siblings.

Wendy said: "I set up our charity after my son died suddenly. Aside from the trauma of losing a child suddenly through epilepsy, I also found that his brother's grief was generally overlooked.

"I didn't want Jon to have died for nothing. I wanted his name to continue so worked hard to get the charity registered in April 2020."

"I think I was able to give an insight into the trauma of losing a child so suddenly and unexpectedly. I believe that as a result of our meeting we will be able to reach out and support more families who may need us, and I am hopeful that he will support information sharing between clinicians and patients."

The MP says he has been exploring the current work done within the NHS on epilepsy conditions and said: "It was incredibly important to give Wendy a chance to discuss this issue with James to see how we can better to address the issue of SUDEP.

"After meeting her last year and hearing about her experiences, I think we can do more.

"Epilepsy can have a major impact on a person's quality of everyday life and be a real struggle to live with. Sudden unexplained death in epilepsy has affected so many people and families in the UK and I am pleased that action is being taken to raise awareness of this important issue."